Sunday, September 28, 2008


I’ve been struggling for about a week to write a post on the topic of “Healing.” Barbara over at Therextras is doing a blog carnival on the topic and I SO badly wanted to participate.
I’m not really a writer, though, and I struggle to write on an assigned topic .
I’ve probably written two pages on the topic—trying my best to put into words the feelings I have about my child’s birth and how I coped with it. This is not my best, but it's what I've got.

I know that Charlie’s birth changed my life dramatically, but I have no measuring stick to compare it by. Every person’s life changes when they have a baby (except maybe JLo—the woman just ran a marathon—clearly she has a staff). I have no way of knowing whether or not my feelings were that different from the average person’s.

I do know that I had a lot of anxiety about Charlie’s future—would I be able to take care of him? How bad would his disabilities be? In some ways, just moving forward into the future has changed that. Some of my greatest fears came true—like epilepsy and vision problems—but many did not. Charlie is responsive and smiles and laughs. He loves toys and eats like a horse. He has a personality and preferences. Also, however, by having some of the worst happen, I found that I would survive. My husband and I talked honestly about Charlie’s future; we weighed some worst-case scenarios and decided that we could live with them.

We did what we could not to wallow in the grief. We watched John Stewart and allowed ourselves to laugh. We went out to eat and watched funny sitcoms. We invited people over to eat dinner. In short, we went on with our lives.

I think it’s important not to let your child’s disability define who you are. We are all more than one thing. I am a wife, mother, Christian, sister, daughter, teacher, and friend. It is always important to remember this and it is just as important when you have a loved one with a disability. You will inevitably feel resentful if your life is being lived for someone else.

I think that it’s important to realize that having a child with a disability is the same as so many other things in life: It’s not what you wanted, but it’s also an opportunity. When I took a job teaching inner-city kids, it wasn’t something I thought I could do. I’d been warned that it would be difficult and being a young, privileged woman didn’t help my cause. But I did it. I took that job and I am SO proud of the work I did there. I grew as a professional and as a person. I changed in many ways for the better and found out things about myself that I didn’t know before. I became stronger.

Being Charlie’s mother has been like that. I am a better person, and I don’t mean it in that bitter way that I sometimes see people writing about. I don’t mean that I’m a better person because I had to give up my selfish lifestyle and live for someone else. I’m a better person because Charlie inspires me. He ignites my passion and fuels my determination. I’m not a better person because I take care of my child—that just makes me a mother. I'm a better person because knowing Charlie has enabled me to grow and change in ways that I am proud of.

I’ve come to realize that perfect healing probably isn’t in the cards for Charlie or me. We will go forward carrying the scars of our journey. That doesn’t make us less, and hopefully we can use what we learn to become better than we were.

I have this obsession with teen dramas and most recently I’ve been on One Tree Hill. Today one of the main characters gave a speech and one of the things he said really rang true, “Maybe you’ll get everything you wished for. Maybe you’ll get more than you ever imagined.” I think that about sums it up.

Thursday, September 25, 2008


So, remember how I said the other day that I really wished Charlie could get one of those walker/treadmill combos?

Well, today Charlie's OT came, and she actually works for an agency in the ARC family. She said that a family was getting ready to donate a Walkable to the facility where she works. If you clicked on that link right there you might be saying, "Holy crap, that thing costs three grand." You'd be right about the holy crap part. So, our OT immediately thought of Charlie when she heard about the donation. We're probably going to buy a treadmill somewhere (classifieds/Craig's list), but HELLO??? I think the universe heard me. I don't want to get my hopes up until I actually see the equipment in my home, but this would be so awesome.


Tuesday, September 23, 2008

Progress and Stuff

Charlie and I have had head colds this week, so I'll use that to explain why I haven't been posting. Truthfully, I feel pulled in a lot of directions and it's hard to organize my brain enough to put together a meaningful post.

Charlie is making some progress and I thought it was worth noting. Charlie is drinking from a sippy cup by himself (on occasion). He's understood the concept for a while, but hasn't been strong enough until recently. Feeding is going well. He's been eating two full meals and either a snack or a third meal every day. It's getting to the point where he complains if we're all at the table and he's not getting something to eat. He's also getting more than twelve ounces of liquid every day. He hates to drink, but we're getting pretty close to twenty ounces on some days. He's chubbing up nicely and my back is sore as a result.

We continue to work on the commando crawling. He's getting better at it, but he does seem to drift to one side--I'm assuming that this is because one side is tighter than the other. The most exciting part is that he seems to be needing less and less input from me to go--hopefully, he'll be going without me one day.

Supposedly we have a new speech therapist and I'm just waiting for her to call. I hope this is a good fit for us because I HATED the idea of "firing" the other girl.

We've started doing "math" with Charlie and he really enjoys it. I enjoy it too since math is always easiest to plan for. I have lessons plans plotted out from now til the end of the year.

The final bit of news is that I think that Charlie is ready to begin learning how to walk. My family was pretty incredulous at this--how can a child learn to walk when they can't crawl? The thing is, when your child has a host of issues, you need to begin early and not necessarily after the completion of the last developmental stage. I am hoping that ABR will improve things, but I can already see that his right arm may inhibit true crawling. Anyway, they make walkers that have little sling seats and I think that something like this might be the key to getting Charlie up. He loves to stand with his Daddy and he's pretty good at holding himself up with his arms. I'd love it if we had a place around here that had a treadmill and an overhead support system, but I'm not sure they exist in my area.

So. . . that's what we've been up to.

Thursday, September 18, 2008

One Year Eval

This is one of those posts that will be dull for those of you with neuro-typical children. I do know, however, that I like to read the details about other kids with brain injury, so I wanted to be sure to include it here. Feel free to skip if it's not your thing.

Today we had the results of Charlie's one year evaluation. There weren't any big surprises. He qualifies for services, but he would qualify regardless because of his diagnoses. We have enough diagnoses to qualify about four kids actually.

Many of you already know this, but for evaluations someone comes to your home, does some tests on your child, but also asks you a lot of questions about the types of things that they don't or can't see in an hour's time. The report was, for the most part, kind of boring. There wasn't anything in there that I don't know.

Basically, he's behind in almost everything. For receptive communication, gross motor, fine motor, and cognition he was evaluated as severely behind. For receptive communication he's moderately behind. For social/emotional and adaptive he's on the low end of average. Did you hear that? My child actually came in as "average" in two areas.

The only thing I didn't like to hear is that his cognitive is severely behind. The evaluator explained, however, that cognition in a small child is often measured by visual attentiveness, and that's why Charlie scored so low. Besides, I don't know if Charlie is a rocket scientist, but he "gets" stuff--sometimes more than I realize--and that's all I'm worried about right now. There's a real interesting difference between motor skills and learning. When you're born, your brain has already been wired with regards to what parts of the brain control what parts of the body. The storage of information, however, is more fluid. There are more options. I'm working hard on getting the information into Charlie's brain and I feel that he understands more than his body allows him to reveal.

I made the difficult decision to try a new speech therapist. I LIKE the woman who sees Charlie now, but he isn't responding to her very well. Also, I do get the impression that she doesn't expect a whole lot from him. One of Charlie's other therapists has recruited a woman who's really into adaptive communication, so hopefully she can help me with things like signing and choice cards. I do hate the idea of "firing" someone, though--especially someone that I think is a nice person--maybe just not a good fit for my child.

Other than that, it's the same ole' same ole.' Charlie is behind, but he's progressing. He's happy, well-fed, and cared for. The older he gets the more I enjoy his company. These aren't the things that go on the evaluation, but they are the things that matter to me.

Wednesday, September 17, 2008

Those Pictures I Promised (and a video too)

Charlie really is making visible improvements. The thing is, they aren't really photo-worthy OR they are difficult for predict. For example, yesterday morning I distinctly heard him say "me me." This is great because he doesn't make the m sound very often, but it's not something you can snap a picture of.

One thing I can photograph: Charlie is really into biting. He bites EVERYTHING. He's bitten me, two grandmothers, and our friend's daughter so far. My husband swears you can see it coming, but I didn't. Here's a picture of him nibbling on his stroller. This is significant because it means that he has the strength and the vision to see the bar, pull up on it, and then hold himself there to chew. Kind of blows my mind how much he's doing these days.

Here's a picture of the cute curls he's been getting on the back on his head. Here he's just holding himself up so he can see better as we take a walk around the neighborhood.

Finally, here's a picture of his commando-crawling behavior. I don't know if it's clear, but he's definitely strong enough to do it--you just need to help him by touching different parts of his body. Often I have to help out with the right hand. I would say that his motor planning is a bigger deficit than his strength. He knows what he wants to do--he just can't get all the steps straight.

Monday, September 15, 2008

Trying to Update

So I've not been the best about updating this space recently. Basically, I'm just now getting back in the groove. Also, the computer I use most-often has been infected with a very annoying virus. We thought we were going to have to get rid of it completely, but I'm going to try a few things before we go that route. At the very least I'll be able to get all my pictures off of it. Still, I haven't really gotten used to using the laptop exclusively.

I made a major decision. Tomorrow I should be going with Charlie on an air plane bound for New York. I decided, however, that we're not going to go. We are still in the process of running tests and making sure that Charlie's medications are correct and that his shunt is working properly. I can't in good conscious take him on an airplane (pressure issues) and to a strange city. I hate this because what are the chances I'll ever go to New York on my own? Probably nil. Sigh. I know I'm making the right decision, though.

In good news, Charlie is showing a real interest in commando crawling. With a little help he's started to pull himself along the carpet with his arms. Unfortunately just a couple of pulls and he's all worn out. I'm sure that he'll get better and stronger the more he does it. His PT was just thrilled today when she saw him doing it.

I guess the final bit of news is that I am still pursuing that business idea. I've figured out start-up costs and equipment. Now, I'm down in the knitty-gritty of the creative side. I'm almost at the point where I'm ready to talk about it. Almost. That is also taking up big chunks of my spare time.

I'm busy; things are good; that is all.

Monday, September 8, 2008

Charlie Update

So last week Charlie had his one year evaluation with Early Steps. That's the state-sponsored early intervention program. It kind of took me by surprise. I mean, I knew it was coming, but the evaluator just tagged along to one of his regular appointments, so it was in the back of my mind and then BOOM she was here with her little case and her checklists. To add to the stress, one of my out-of-town guest arrived right in the middle of the whole thing.

I haven't gotten the results yet, but a novice could see that Charlie is behind. The evaluation just helps you make a new set of goals. They'll say "he's at eight months in gross-motor" and you can build from there.

I was pleased to see that he could do some things that the evaluator didn't expect. Also, his vision has improved by leaps and bounds. She was thrilled to see him tracking a light source on both sides. His vision is still slow--if something moves too fast then he can't track it--but he's definitely using it.

When the evaluator last saw Charlie he was three months old and he could do almost nothing physically. Now, he picks up his head while on his stomach, rolls over, prop sits, rakes in objects with his hands, picks up toys, and reaches. This is wonderful for my mommy-heart because it means that he can play. He is able to play with toys, pick them up, manipulate them. Small potatoes in most homes, but we don't take anything for granted in this house. He's getting stronger and he's also showing signs that he's bored with the status quo. I'm going to have to start coming up with some new activities.

The evaluation also pointed out some areas where I could make some changes. Charlie shows absolutely no knowledge of names. The OT reported that with his level of intelligence and awareness he should know his name by now. Since he knows words like "up" and "sit" and "stand" then he probably should know his own name. I think the problem in that my family is the nickname family. The kid has a thousand nicknames and they're constantly changing: Bean, Bambino, Bino, Chaz, Munchkin, Munchie, Peanut, Carlito. Is it any wonder he's unsure? So, the big assignment for now is to work on using only "Charlie" as his moniker. Tough assignment, but I know we can do it!

I won't get the official results til next week, but they aren't critical. I know we're behind and this will just help us create new goals. In general, I am happy to report that Charlie is growing and learning at his own pace. As far as I'm concerned, if he's progressing than I'm happy.

I wanted to post pictures, but I haven't had a chance to take any. I promise to work on that!

Sunday, September 7, 2008

The Part Where I Whine For a Bit

I'm sure no one wants to hear me whine. Actually, I'm pretty sure no one is even reading this blog since I've been MIA for a week, but that's OK--you probably don't need to read this anyway.

My mother broke her foot on Friday evening.
My grandfather (the terminal one) did not handle evacuating very well.
My parents evacuation condo in Baton Rouge went without power even longer than their house in New Orleans did.
My desk top computer has been infected with some seriously nasty virus and I'm pretty sure we're gonna have to put her down. That's the computer that the Internet is hooked up to, so it's been two days of trying to figure it out before we relented and just hooked up the laptop.
My MIL's cat died--most likely from all the stress of Gustav.

Can I please get a break? I've got the last minute evacuation crap, the hospital stay, and then I come back. Everyone's stressed to the max from the last storm and NOW they're saying that there's another one coming. I broke down and attempted to self-medicate by drinking rum and diet coke. You know what? That made me stressed with a touch of panicky.

I've got tons to write about Charlie, but right now I'm just gonna go sip some tea and watch Reba. I need a break or something.

Friday, September 5, 2008

Click Your Heels

It would be nice if you could just click your heels and be home, but in real life you have to drive, fly, or walk.

We drove home yesterday and made pretty good time considering all the other people on the road who were also on their way home. We did amazing stuff like showering in our own showers and sleeping in our own beds. Heavenly. Today the Hub is back to work and things seem pretty normal.

Charlie is looking good although he still has the stuffy nose that he had when we started the trip. I'm not completely convinced that he was ever having problems with his shunt. I suspect it was more a case a exhaustion, dehydration, and having people stick you with needles for hours on end. We're still going to follow up with his home neurosurgeon just to be safe.

Now, I'm going get to work getting my house back in order.

Tuesday, September 2, 2008

Hospital Land Part Deux

So Charlie had a bad night and this morning the nuerosurgeons came in and decided they were very concerned about the shunt. Apparently last night the radiologists looked at it, but this morning the nuerosurgeons took a look at it and were not convinced that everything was fine. They stopped foods, anethesiology came in and had us sign consent, and we were on the docket for a shunt revision at 2:30 pm. As a last resort they changed the settings on his shunt, but they didn't expect that to help.

Well, they were wrong. He perked right up and has been playing and having a good ole time ever since. No one can believe it. We'll be here another night, but things are looking good.

Can't wait to get back so I can check on everyone in blog land.

Howdy from Hospital Land

I've got one seriously cranky baby, but things are fine here. Shunt looks good (I wasn't super-worried), and now we're awaiting some news about his current phenobarb level. Hopefully once we've got that under control, they'll let us get home.

Charlie would like no one to touch him and no one to move him. Pretty much not gonna happen. For now, he's sleeping and all is well.

Monday, September 1, 2008

Home Away From Home

So. . . here we are again.

Arkansas Children's Hospital.


Saturday night Charlie got the sniffles.
Sunday we evacuated--he was Ok, but didn't feel like eating very much.
Today, he was barely eating at all and just kept sleeping. When he wasn't sleeping he was being a grouch, which he never is, so I decided to take him to the hospital clinic for a once-over.

Bottom line: He definitely has some kind of funky virus giving him watery eyes, a cough, and some serious congestion. This doesn't necessarily explain his extreme lethargy, though. It's probably not the shunt, but at some time this evening/morning he'll probably be getting a CT scan and a shunt series to be sure. His heart is beating normally and he's getting enough oxygen. A blood test has shown that he most-likely is taking WAY too much phenobarb, so we've discontinued that until we can get a better level in his system. They're also worried about dehydration, so they decided to admit him, and hopefully they'll release us tomorrow.

I was doing pretty well til it took them six tries to get an IV in him.

Well, they've just told me that we're getting ready to do the CT scan. Hopefully, after that, we'll get some sleep.